The Concept of ME/CFS

Not gone through the whole thread here, so apologies if this has already been mentioned.

Very good, but I think there is something that should be specifically noted as an extremely common, additional and highly disabling symptom, though I appreciate it is likely covered within the more generic umbrella terms used.

Once my wife has overdone things and crashes, yes she gets the inevitable deep fatigue, like the energy has been sucked from every cell in her body (and maybe that is not so far from the truth). But when she is slumped back in the sofa like that, eyes closed and in "shutdown" mode, I now know that utter exhaustion is only part of why she is crashed out like that, because the other headline symptom is that she feels downright bl**dy ill, very very poorly, like a bad bout of flu. Which is of course how the derogatory term "yuppy flu" originated. That symptom in itself is totally disabling, and combined with the profound exhaustion, renders my wife incapable of doing anything, whereas normally she is strongly driven to do whatever she can manage. Like many others here, my wife is one of the finest examples that PwME are not that way because they do less than the are capable of.

So I do feel that this symptom of feeling desperately ill as part of a crash, is important to bring out explicitly, because it is very real and not in the least imagined. Maybe the "malaise" part of PEM should be elaborated on a bit?

Just a thought from me as a very uninformed non-medic: Has any study ever been done to to run toxicology tests on PwME when they are in a crash? Could it be that when in such an energy deficit, toxins may not being getting removed properly, and making them feel so ill? Something for sure makes my wife feel very ill in crash circumstances, does anyone know why that is? Or has the focus been only on the fatigue/exhaustion aspects? I'd think there might be mileage researching the "feeling very ill" aspect also?

Edit: Ah, realise I came into this thread too late, but I'll still leave this comment here. And I realise @Jonathan Edwards did in fact mention nausea.
 
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Barry said:
Once my wife has overdone things and crashes, yes she gets the inevitable deep fatigue, like the energy has been sucked from every cell in her body (and maybe that is not so far from the truth). But when she is slumped back in the sofa like that, eyes closed and in "shutdown" mode, I now know that utter exhaustion is only part of why she is crashed out like that, because the other headline symptom is that she feels downright bl**dy ill, very very poorly, like a bad bout of flu.

So I do feel that this symptom of feeling desperately ill as part of a crash, is important to bring out explicitly, because it is very real and not in the least imagined. Maybe the "malaise" part of PEM should be elaborated on a bit?

Just a thought from me as a very uninformed non-medic: Has any study ever been done to to run toxicology tests on PwME when they are in a crash? Could it be that when in such an energy deficit, toxins may not being getting removed properly, and making them feels so ill? Something for sure make my wife feel very ill in crash circumstances, does anyone know why that is? Or has the focus been only on the fatigue/exhaustion aspects? I'd think there might be mileage also researching he "feeling very ill" aspect also?
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I relate to this 100%, 'tiredness' or 'fatigue' has never been the issue for me either, but rather being hit with feeling deathly ill and toxic. And then a frightening sheer total exhaustion following along secondary to that. The idea of running toxicology tests when someone with ME is in that state does indeed sound interesting. It does feel like becoming filled with toxins and the body not removing them properly.
 
Apologies if this is in the wrong place, and I have skimmed the thread but it is quite long so I have not absorbed all of it.

I saw some comments re: ME/CFS as a concept being distinct and new from both ME and CFS. I was curious about this since the description that best matches my physical symptoms is Ramsay's description -

Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis.
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I have cognitive issues and OI also (with SARS-CoV-2 infection onset), but these two are not unique to ME as far as I can tell. Is the Ramsay conceptualisation of ME considered a subset of ME/CFS, or a distinct separate condition, or something else?
 
It depends who you ask. I think here, ME/CFS is used as the term covering a condition involving PEM more or less described by the more modern criteria that include PEM e.g. NICE 2021, IOM SEID (2014 I think), CCC, ICC. I don't think there is much evidence to get carried away with subsets at this point.

Abnormal muscle fatiguability is definitely recognised as part of the collection of symptoms that most of us here define as ME/CFS. Edit - although I haven't seen much about it being as long lasting as Ramsay mentioned.

Most of us here don't like the term CFS, because of its focus on fatigue, and because of its use by proponents of a psychogenic causation paradigm. Similarly for CFS/ME.

Many of us here don't like the term ME, because Ramsay actually called the acute triggering disease he saw as ME, and the persistent symptoms as chronic ME, before realising that the 'chronic ME' could follow other triggering acute infections. Also, I believe there's no evidence at present for the pathology the name describes. And it can come across as a symbol of our obsession - all about ME, and us trying too hard to have a serious sounding disease-y sort of name for what many see as 'a bit of tiredness'.

Others will be able to speak with more authority about what and when Ramsay said - but, I think it mostly doesn't matter.

Abnormal muscle fatiguability is certainly part of ME/CFS - although of course it is a symptom of other things too.
 
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ellesa said:
Is the Ramsay conceptualisation of ME considered a subset of ME/CFS, or a distinct separate condition, or something else?
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Did you read the paper on Qeios the thread refers to @ellesa?

The point I am making is that ME/CFS is fairly much what Ramsay called chronic ME. Unfortunately, charities and 'ME physicians' often confuse that with 'ME' as defined by Acheson as an acute epidemic viral illness somewhat resembling polio (typified by the Royal Free episode). It is now fairly clear that there was no special neurological illness that warranted that name. McEvedy and Beard may well have been right about the apparent signs of neurological disease being misinterpreted.

The reason why it matters is that a lot of people with ME/CFS get told they have this non-existent neurological disease 'ME'. They do have a neurological disease but it has nothing to do with the Royal Free illness other than that like EBV and other infections whatever they caught in the Royal Free triggered ME/CFS in a few people.

Ramsay's use of 'ME' for his 'chronic ME' and his recognition of the features of what we now call ME/CFS justifies, to my mind, continuing to include the ME term at least as initials in the name used now. But his description is not quite what is now recognised.

He talks of muscle fatiguability for 3-4 days. That may sound like PEM and being unable to do things for 3-4 days after an exertion. But he was referring to muscle weakness on repeated use as neurologically defined in formal tests and the consensus is that no such weakness can be demonstrated reliably in people with ME/CFS. There is nothing equivalent to the fatiguability of myasthenia gravis. The situation sounds to me much more like that with flu where you simply cannot manage to do things for three days. It is not formal 'fatiguability', you cannot start to do it.

I am pretty sure that Ramsay believed that there was some specific muscle pathology in 'chronic ME'. Behan produced some data that seemed to support that but in the 1980s elsewhere muscle studies failed to show any specific pathology.

So my conclusion is that continuing to use the term 'ME' has a major risk of perpetuating pseudoscientific ideas about an illness that never existed instead of focusing on one that does. The ICC criteria typify this. They assume there is widespread pathology, including neurological, without basing this on evidence.
 
Jonathan Edwards said:
The point I am making is that ME/CFS is fairly much what Ramsay called chronic ME. Unfortunately, charities and 'ME physicians' often confuse that with 'ME' as defined by Acheson as an acute epidemic viral illness somewhat resembling polio (typified by the Royal Free episode). It is now fairly clear that there was no special neurological illness that warranted that name. McEvedy and Beard may well have been right about the apparent signs of neurological disease being misinterpreted.

The reason why it matters is that a lot of people with ME/CFS get told they have this non-existent neurological disease 'ME'. They do have a neurological disease but it has nothing to do with the Royal Free illness other than that like EBV and other infections whatever they caught in the Royal Free triggered ME/CFS in a few people.

Ramsay's use of 'ME' for his 'chronic ME' and his recognition of the features of what we now call ME/CFS justifies, to my mind, continuing to include the ME term at least as initials in the name used now. But his description is not quite what is now recognised.
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Thank you, that makes sense. I did read the first draft that was posted but I was a little foggy at the time (and always?)

Occasionally I try and get clear in my head a definition of ME that can fit in a half tweet length or so, for the rather common conversation with LC patients on twitter who ask (not always in good faith) if PEM is the same as overexertion-induced flares in other chronic illnesses. Usually I get muddled and give up for a couple of months. So far I've got the typically prolonged recovery as the main point of difference
 
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